Backing up... week 3

It's the Mom again. Another week has passed, and it's been a tougher one. We were warned that life in the NICU would be consist of 2 steps forward and 1 step back. Well we've had some steps back this week after so many leaps forward.

The most significant step back has been the digestion. Last week she made it up to full feedings, got her IV taken out on her 2-week birthday, and started on the milk fortifier to increase her calories. She was getting ready to grow and grow and grow. Well, after reaching 26mL of breastmilk with fortifier, she started having more trouble digesting. Sometimes it would go fine, sometimes she would spit up a lot, and sometimes she would have almost the entire feeding left over when it came time for the next one. After a couple of days of this, the doctor noticed her belly was very distended.

Yesterday (Thursday) they did an x-ray of her belly, and found that her small bowel was very distended and there was a large amount of air throughout. The doctor then ordered a "barium enema". I'll spare the graphic details but it's a test where they inject a contrast solution from the "downstream" direction and image the colon in a cath-lab type room. For this we had to go on a "field trip" to radiology, so she rode in the same kind of transporter she took through the tunnels from Abbott when she was born.

The exam turned out well. There were no apparent structural issues with the colon, but it also didn't answer the question about what was going on. Unfortunately, this meant she could not receive more breastmilk feedings until more testing was done. So after being IV-free for one week, on her 3-week birthday she got a new IV, this time in her leg, so they could restart TPN nutrition. She was disappointed about this, and so were Mom and Dad.

Today her belly looked a little better, but the morning x-ray still showed a lot of air. So again, she was loaded into the transporter for a second "field trip" to radiology. This time she was catching on that these were not fun outings. They did an upper GI study this time, injecting contrast from the "upstream" direction. Now we wait to see a series of x-rays to watch the contrast move through. We're looking forward to getting this question settled so she can start her feedings again as soon as possible. Prayers are as always much appreciated!

Transitions

Another weekend passed without notice. Since our days are similar, wake, eat, do task, go to Naomi's, it's difficult to discern Saturday and Sunday from another other weekday. This weekend though, we started to learn how our near future might change.

Naomi was continuing to do well on Friday. She was up to 24 mL milk, which is where she will stay for her weight (approximately 3 pounds). They will start to add human milk fortifier to her milk too. It is basically extra protein and vitamins for her. I imagine them grinding up Flinstone chewable vitamins in the back room and adding it to her milk, but it's probably a more elaborate formula.

Naomi has also started sucking during her feedings. It is a skill that the nurses help us to help Naomi develop. My experience prior to this was from a black and white pencil sketch from some parenting book. The picture would be more representative if it could capture a baby going after a nuzzle Evel Knievel style. After some friendly advice though, Naomi calmed down and pretended to eat.

Naomi appeared to like being IV free. She is able to move her arms around more and we have fewer cords to untangle after kangaroo time. It also allows her to perform miracle Houdini acts, which I am sure every parent observes post-escape routine. We've started adding wrapping and tucking in routines to temperature measurements and diaper changes. I even washed her face over the weekend, which she seemed to enjoy. I was expecting a slightly madder response, but so far I think she has saved her stink eye faces and tantrums for Ana.

The only minor setbacks have been a couple of spells she has had recently. She was the rock star of the NICU since she didn't have any for the first two weeks, which meant she got to wear clothes for the first time. Her first spell was Saturday which meant she only had clothes for one day.

Her spells have been primarily desaturations, but her heart rate has also dropped substantially. The nurses have responded promptly. So far Ana and I haven't been there to witness one. For those of you unfamiliar with spells, they are basically when the baby forgets to breath, that is why Naomi is on caffeine. It is common in early birds since they normally wouldn't have to breath at this point in their life.

The good news is Naomi's heart murmur appears to be a whisper of its former self and today the doctor reported that she was unable to hear one. We were very happy to hear the good news. We've been fortunate to have many more ups and relatively minor downs for the first three weeks.

Today, Naomi is 32 weeks. It will still be at least two weeks until we try to feed her without a tube and up to four to eight weeks until she can come home. Her neighbors have since rotated out three to four times in each room. It's always nice to see parents arriving with a car seat since it means they will be taking their little one home. If all goes well during the next week or so, Naomi may be transferred to the Infant Care Center (ICC) at Children's.

Potty talk...and other week 2 highlights

It's me again... the Mom. It was another long but good week. Jeremiah went back to work a few days this week so it was my first time going it alone during the day. I took good notes from various conversations, since we're still figuring a lot of things out. And I even saved some poopy diapers for him to change at the 6pm cares.  Speaking of poopy diapers, here are some highlights from the week:

• Potty talk: The mantra early in the week was "Poop and fart, Naomi, poop and fart".  Yes, it's poor etiquette to use such language, but we really wanted to encourage her to get through her ever-increasing feedings.  She had trouble some of the days, with some missed feedings due to too much left in her stomach and large amounts of air in the belly.  But by her 2 week birthday she was keeping up with her feedings enough that she no longer needed the TPN & lipids, so she got her IV taken out.  Way to go, Naomi!
• Belly button blues: We spent a lot of the week checking out the redness around her belly button.  She ended up needing antibiotics for a few days but it's looking good now.  This is great because when it was red they didn't want to put her on her belly.  Now they can position her this way as much as they want, which she likes much better, especially for digestion.
• Bulking up: Naomi is now back to her birth weight, plus a few grams. And she looks like she's starting to fill out, especially in the face.  She has a ways to go before reaching mega-cheek status like her cousin Izzy, but we're on our way!
• Attitude:  Naomi has started to show a lot more personality this week, with heart-melting smiles as well as feisty wiggling and protests, especially during temperature taking and diaper changing.  She also likes to grab her nasal cannulae repeatedly and pull them out of her nose.  I've tried to explain to her that she needs those, and if she doesn't behave, they're going to put mittens on her.  So far, my reasoning with her has not been successful... a sign of what's to come??

Can't wait to see what week 3 has in store. 

Two Week Fussies

This Thursday, at 2:02 pm, Naomi will be two weeks old. While old wives tales have been invaluable for correctly determining the sex of our baby, it seems that Naomi wants to get a jump start on the the terrible twos. She's maintaining her feisty nature and has been called a little stinker by more than one nurse. They also think she is adorable, so all has been forgiven.

Tuesday, Ana arrived at Naomi's just after the 12 PM care. Naomi did well over night. She was digesting her milk well and had been bumped all the way up to 15 mL. Her belly button was still red, but the doctor thought the antibiotics were helping to shrink the area of the infection. Her heart murmur was still there, but as long as Naomi keeps digesting well, they will continue to monitor it without trying an intervention that would have some risks.

Tuesday evening, Ana and I went to our one and only baby class. We canceled a couple that were no longer applicable or not needed. The nurses, counselors, and social workers will help us with some of the things we need to learn, especially those related to very early birds. We figured we should attend at least one though. The class was enjoyable even though half of the items didn't apply to our baby. There was one item though that I disagreed with the instructor, it involved the definition of a small diaper. I should have brought a wee-pee.

Wednesday, Ana arrived at Children's early since we forgot to grab more plastic milk bottles on our way home Tuesday. We always feel guilty taking so many home, but the nurse that night filled a giant plastic bag for us to take home. Ana spent the day in and out of Naomi's room. She has been feeling better. Her belly is a little tender, but otherwise she hasn't had any problems. Her blood pressure has also decreased to a more reasonable 126/86.

Before I arrived Wednesday evening, Naomi had a lot of smiles to share with Mom. Her milk intake increased another 3 mL and she was approaching the point where they would ween her off of her IV fluids.

It was another good day for Naomi and I was happy to be spending the evening in her room even though baby classes are important.

Thursday, I worked from home in the morning and took the afternoon off to spend a little more time with our little girl. It was a big day for her, she was going to get her IV removed. Her feedings were going well enough and she was digesting 21 mL of milk. She was also finishing her antibiotics and her belly button was starting to look better.

She slept through most of the day while Ana and I completed various tasks in her room or the Ronald McDonald house. I arrived back a little before Ana and noticed that Naomi's IV pole was gone! Her little arm was covered in tape and an antibacterial cream to prevent infection after removing the IV.

While the nurse was finishing putting things away, I was waiting patiently to hold my daughter for the evening. It is one of the most special hours of my day.

It was hard to believe that Naomi was already two weeks old (31 weeks gestational age). It will still be another three weeks until she is allowed to try to breastfeed or take a bottle and another 5 to 9 weeks until she can come home. I am sure we have a lot more to go through, but our little girl has been a rock star. We have been very fortunate.

Success is measured 3 mL at a time

Saturday melted into Monday over the Labor Day weekend. By Monday night I was drained and we headed home to rest. The weekend was filled with little steps that signified Naomi's improvements.

Saturday we stopped by Naomi's room a little after noon and she was being fed 9 mL of milk every three hours. So far, every increase in milk has been 3 mL. Before increasing the feedings the nurses check to see how much Naomi is digesting by pulling back the contents of her stomach using a syringe. It's the kind of gross thing that a father can tell his daughter about when she is older. When you reach 9 mL, you get a special syringe pump to give you milk slowly for 30 minutes. They'll wait until she is older to expand her stomach like it would during a normal feeding.

Her belly button was still sore and looked red. The doctor was waiting to see if it would get better on its own. If not, they would start antibiotics. The big news of the day, however, occurred after 3 PM cares. Never one to be complacent, Naomi turned her head after the nurse carefully positioned it earlier. It was hard to believe that such a tiny girl was already lifting her head and turning it during "tummy" time. After Ana positioned her head, she turned it twice. I'm not sure if that was a sign of childhood rebellion or "look at me mom!"

Sunday, Ana and I tried to get out of our rut. We awoke early, and after packing a few quick things, headed off to see Naomi in time for 9 AM cares. She didn't digest her milk well that night so she was kept at 9 mL. The lack of digestion combined with her heart murmur worried the doctors. They told us they were going to continue to monitor her PDA and if her feedings didn't continue to increase, they would most likely try a drug through her IV to prompt the PDA to close. The lack of digestion can sometimes be a sign that her heart isn't pumping enough blood to her intestines because of the opening.

After cares, we headed home. Our schedule shift for the day was prompted by the need to try to fit in midday naps. I've tried sleeping on the couch in Naomi's room, but it's difficult with all the beeping, alarms, and whiz-bangs. I'm beginning to get worried that Naomi won't be able to sleep unless there are several alarms going off in the room at random times.

We arrived home shortly after lunch, recouped, repacked, and went back to Naomi's room for 6 PM cares. She was given antibiotics for her belly button. The doctor didn't think it improved. We also didn't get a chance to hold her. We traveled home, did some chores, and got ready for bed. After a week and a half of this, I think I could write a book called eat, pray, pump.

For those of you who didn't know, Naomi's original due date was Halloween before they shifted it to November 7. Since we didn't know whether she was a boy or a girl we used the gender neutral name, "Little Goblin." I guess now she is a little goblina. As a result of the nickname, Naomi's aunt and uncle found her a scary goblin book for us to read to her at night. We waited until she was at least 10 days old to read it to her so she wouldn't get scared.

Monday came too fast. I was planning to return to work on Tuesday to figure out a manageable schedule. When your baby comes 11 weeks early and FMLA is 12 weeks, you start to think about how can we split up our time to cover Naomi's needs now and when she comes home. The estimated range for when Naomi may come home is 7 to 11 weeks from when she was born.

The day wore by too quickly as always. We arrived just after 12 PM cares, so we stopped in and whispered hi to Naomi. After 3 PM cares, it was my turn to hold Naomi again, so I put on my kangaroo time gown and hopped in the rocking chair. Naomi snuggled against my chest for an hour or so before the nurse came back to help put her in her incubator.

She had slowly gained some weight through the weekend and was still feisty as ever. Her digestion was slow, but it did improve over the weekend. The doctor is planning to continue to monitor her heart and is hoping her PDA will close on its own. Each 3 mL increase in milk is a step in the right direction as she gets stronger and stronger.

I'd also like to say thank you very much to all of the people who have helped us and to everyone for their thoughts, prayers, and hope. Thank you for the gifts and the time you have taken to help us. It is very humbling and inspiring.